Help! About 7 years ago Mom and I completed her Physician Orders for Life Sustaining Treatment together. At the time, she had dementia probably around stage 3. Well now she is between 6 -7. Her ALF nurse suggested hospice care for my mom- had no idea this was available for dementia (she also has other issues). Anyway, the social worker wants me to complete another POLST. Mom's wanted all life sustaining procedures. If I have to complete a new one do I follow her previous??? I want to honor my mom's wishes but boy at the same time if she has a major stroke or something what kind of life will she have after if we do the life sustaining measures??? I ask that rhetorically- I just don't want her suffering; she already is.

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This is very hard decision and one that often will not "stay" made - at least in our own minds.

At 88, my father has paranoid personality disorder, advanced vascular dementia from multiple TIAs, high blood pressure, Parkinson's, heart problems with stents, anxiety, and depression. I am his guardian (against his wishes) and placed him in MC (also against his wishes). Dad has always had a "do everything possible" point of view. I think this is founded in his mother's death from cancer when he was 21 and losing his father less than 5 years later.

When Dad had a major heart attack at 84 I pushed for "everything" care per his wishes. He was resuscitated after being down a little over 2 minutes. I wasn't his guardian at that time but I would have made the same decisions even if I had been. Yet I feel guilty about it. Whenever he has a particularly bad day, my mind tells me he's only suffering now because I wasn't ready to let him go then.

Physically and mentally Dad is much better since entering MC and taking all his medications as prescribed, eating better, walking more. The only "happy" times my father has experienced in the last few years are watching his young great-grandchildren play or interacting with them. Because of Dad's anger over my "take over" he won't come to my house anymore to see those kids. Last time we took a couple of kids by to see him, he became verbally abusive to the 3 year old who wanted to explore, then grabbed his arm hard enough to leave bruises - so no more visits from the kids. As far as I can see, most of his days are filled with anger and verbal rants over how badly everyone (from his wife and children to bosses and co-workers) have treated him. The geriatric psychiatrist agrees Dad is unhappy but doesn't think there is much more that can be done for him.

Dad needs the old stent replaced and a couple more implanted. He doesn't want the surgery and there were some major complications due to his inability to follow directions after the original stent procedure. There's a real risk he wouldn't survive additional stent procedures so I have decided not to force the surgery. He's at high risk of heart attack and stroke so I have also filed a DNR - one sibling supports that and one opposes. The opposing brother states I just want our father to die so I won't be troubled with him anymore. I don't think he understands how some decisions always trouble you.

Three years ago the coronary surgeon told me my father was likely to have another major heart attack within 12 months without additional stents. I wouldn't be surprised if Dad has that heart attack and dies today. I wouldn't be surprised if Dad is still around another 5 years or more - five of his aunts made it to 93, 98, 98, 99, and 99. Only God knows for sure.

My Dad's wishes, particularly the long standing views that pre-date his dementia are always considered in my decision making. I ask myself what pre-dementia Dad would decide. But I also need to consider what I believe Dad's best interest is today so sometimes my decision doesn't match what Dad's decision would have been.
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With Dementia and other problems you really do not want to do any life sustaining measures.
CPR great on TV and on a healthy person. An elderly, frail person will have most ribs broken and possibly the sternum. Could she recover from the pain from the broken ribs?
Feeding a person nears the end of life they will stop eating, you do not want to tube feed someone that is not going to be able to digest food properly.

Hospice will do everything they can do to manage symptoms of pain but the pain of broken ribs and a cracked sternum would probably be a bit much.

Hospice will provide products to thicken food so the chance of aspiration is minimal, but it is a possibility. But as the patient stops eating it is not a good idea to force them to eat.

Do the new POLST I am sure that when she completed the one 7 years ago she had no idea that she would be where she is now. Ask yourself ..would she want to continue life not knowing who you are, where she is, not being able to do all the things she used to do....I know I wouldn't.
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Tthink about this: do no harm or do no further harm? Many life sustaining treatment can and does add more pain and suffering. That also goes to the caregiver s health.
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Clarise1 Jul 2018
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This is a tough decision

when mom did her POA she couldn’t decide herself what she wanted but told me verbally to give her a couple of weeks chance if something happens- that was over 8 years ago - she’s almost 95 now and I recently signed a POLST at her facility’s urging

while I certainly wouldn’t want bone crushing CPR or a feeding tube for her, there’s a lot of in between I don’t know unless we’re in the moment

she had sepsis last year and ER doctor was considering ICU - polst form says if not full code then ICU would generally be avoided - hmmm

Last week I thought mom had stopped breathing for a moment and my first reaction was to shake her arm and say breathe -
afterwards I thought what am I doing ?
asleep in her own comfortable bed - that would be a wonderful way to go - I hope she’s that lucky
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Clarise1 Jul 2018
Thanks for responding - I hope your Mom (and mine) pass peacefully!
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